To the editor: Guest taxpayers Euan Ashley and Rachel Keranen made a convincing case for the financing of NIH subsidy as a valuable and proven investment (“NIH's research guarantees less healthy and less rich America.” May 28). I am a living proof that this is true.
At 74, I live every day in the shadow of Alzheimer's. My mother began to lose her memories in the late 60s, and I am genetically predisposed to the same destiny. However, today I remain mentally acute, perhaps thanks to an experimental weekly dose of 6 mg of rapamycin.
This medicine is not approved for Alzheimer's, but in my case, it seems to be working. I have seen firsthand how promising therapies can offer a beautiful extra time of clarity. Even so, I worry every day that the benefits are stopped, that side effects will arise or that others will not qualify for these tests. That fear is overwhelming and shared by millions of Americans who carry the same genetic risks.
We have waited too long for progress. The experimental medications of today took decades to reach human evidence, and many never reach approval. Barriers for clinical trials and out -of -label access leave families fighting for hope.
I urge our legislators to act now: increase federal investment in Alzheimer's research, rationalize the roads of compassionate use for experimental treatments and ensure that Medicar will and Medicaid cover innovative therapies. We cannot afford to reduce speed. Every day of delay it costs precious memories and precious lives.
Brian Valerie, Dana Point
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To the editor: The cuts in research financing have affected me when I worry about cancer patients in the United States who will finally pay the price. I have already heard of patients whose clinical trials have been closed, impacting a 4 -year -old child leukemia patient who will probably lose his life.
He was a cancer patient who fought against an incurable form of non -Hodgkin lymphoma from 2006 to 2018. Diagnosed at the age of 46, he was in continuous treatment to 58 years. My son was in the kindergarten when they diagnosed me and I spent all his k-12 years with a sick mother.
In 2012, when I was in my fifth line of treatment, I heard about a phase 1 clinical trial at the National Institute of Health/National Cancer Institute of an individualized Revolta therapy called CAR T (T -cell therapy Receiver of chimeric antigen) for my type of cancer. The trial included only 17 patients, but the results were surprising. The seventy -five percent of the patients achieved a full long -term remission.
I was determined to stay alive to receive T CAR therapy and in 2018, I could register in a phase 2 clinical trial of this therapy in UCLA. In just one month, he put me in a complete remission, something that none of my previous six therapies achieved.
On July 16, I will celebrate my seven -year -old Car T's birthday and thank my lucky stars for NIH and the financing of the research that saved my life. And that boy who was in the kindergarten when they diagnosed me now is 25 years old.
Laurie S. Adami, Los Angeles
